Matthew 'Mattie' Stepanek Dies

By STEPHEN MANNING
Associated Press Writer

ANNAPOLIS, Md. (AP) - Matthew "Mattie" J.T. Stepanek, the child poet whose inspirational verse made him a best-selling writer and a prominent advocate for muscular dystrophy, died Tuesday of a rare form of the disease. He was 13.

A funeral mass for Stepanek will be held Monday at Saint Catherine Laboure church in Wheaton at 11 a.m.

Mattie's mother, Jeni Stepanek, says it will be a celebration of her son's life.

Stepanek, of Rockville, died at Children's National Medical Center in Washington, according to a statement from the hospital. He had been hospitalized since early March for complications related to the disease that weakened most of his body's major functions.

Jeni Stepanek says her son's condition worsened severely in the last two weeks of his life. She says she reached a point where she told him it was OK to rest, he closed his eyes, and in ten minutes he died.

The tireless Stepanek wrote five volumes of poetry that sold millions of copies during his short life. Three reached the New York Times best seller list.

"With Mattie, there always was a silver lining," said his friend Jerry Lewis, chairman of the Muscular Dystrophy Association, for which Stepanek served as a spokesman. "Life threw its worst at him and he responded by seeing the good."

Stepanek began writing poetry when he was 3 years old, in part to cope with the death of his siblings from muscular dystrophy. From an early age he dreamed of having his poetry published.

Muscular dystrophy ravaged Stepanek's family - his two brothers and sister died at young ages from the disease and his mother, Jeni, 44, has an adult onset form that has left her in a wheelchair.

Born July 17, 1990, Stepanek was diagnosed with a rare mutation of the muscle-wasting disease. Doctors didn't expect he would live longer than 24 hours.

He was hospitalized many times throughout his short life. He rolled around his home in a wheelchair he nicknamed "Slick," and relied on a feeding tube, a ventilator, and frequent blood transfusions to keep him alive.

In the summer of 2001, Stepanek nearly died from uncontrollable bleeding in his throat and spent five months at Children's. When it seemed he would not survive, the hospital got in touch with a Virginia publisher to try to make what seemed to be a last wish come true by printing his work.

Stepanek and his mother had sent the book to dozens of New York publishers and had been rejected, according to Peter Barnes of VSP Publishers. But Barnes said he was surprised when he first read the work.

"I was stunned, some of it was really good," he said Tuesday. "It was very perceptive and thoughtful."

VSP Books printed 200 copies of "Heartsongs" to be handed out to friends. But after a news conference publicizing the book, interest exploded. "Heartsongs" went on to sell more than 500,000 copies.

"Mattie rallied after that," he said. "He went from being on his death bed to becoming this huge publishing success."

Stepanek went on to recover, and appeared on "The Oprah Winfrey Show." He followed up several months later with "Journey Through Heartsongs" and went on to publish three more books. He counted the likes of former President Jimmy Carter, who wrote the foreword to one of his books, among his friends.

Despite his condition, Stepanek was upbeat, saying he didn't fear death. His work was full of life, a quest for peace, hope and the inner voice he called a "heartsong."

"It's our inner beauty, our message, the songs in our hearts," he said in an interview with The Associated Press in November 2001. "My life mission is to spread peace to the world."

Stepanek became a Goodwill Ambassador for the Muscular Dystrophy Association in 2001 and appeared on three of Lewis' annual telethons. He appeared at numerous MDA events and fund-raisers and attended the MDA summer camp in Leonardtown each year.

He is survived by his mother.

(Copyright 2004 by The Associated Press. All Rights Reserved.)